Sunday, November 30, 2014

A Conversation between Two Specialists

by Allie Shukraft and Lizzy Miles

At both ends of the generational pendulum lie two groups that may seem to be daunting to some: children and the senior population. These are specialty populations because there are unique considerations with aspects of their medical care, especially within the framework of palliative and hospice care.

Here Allie Shukraft, pediatric palliative care social worker, and Lizzy Miles, geriatrics hospice social worker, discuss some of the differences and similarities between these two seemingly divergent specialty populations. Allie and Lizzy also describe their social worker roles as they relate to their patient groups.

Allie: For children, developmental stages are different than adults, but basic needs are the same. There is a wide range in understanding and experience in pediatrics, and this can impact the tasks and goals that the family chooses to strive for. However, the needs are much the same as those of any age: to be loved, to have understanding, and to be unafraid. Luckily, most children have their parents and siblings, if not a floor full of caring staff-members throughout their palliative course.

Lizzy: I agree with the "needs" for any age. I do think that applies to my patients as well. As far as development cycles go, gerontology is a newer area of study than pediatrics. In gerontology, developmental cycles are not as clearly defined as they are with children. You could ask five different experts and get five different answers. We don’t categorize our patients by age because our clients do not use their age to define themselves. My favorite intervention with elders is Dignity Therapy, developed by Harvey Chochinov. The premise is simple: to see patients as they see themselves. Our patients don't see themselves as infirm, they remember when they rode motorcycles or traveled to some foreign country at the drop of a hat. Their approach to their dying is going to be less about their age and more about their general philosophy towards life.

The best thing we can do for our gerontology clients is to get to know them and have them feel that we "know" them as well.

Could you give me some examples of how your approach might differ based on developmental cycle for children?

Allie: Well, children are going to differ greatly in their own view of death. Some of this will be along developmental lines, and some on experiential lines. If the child has already experienced a death, such as a pet or a family member, for example, this loss can color how the child views death and the words that he uses to describe it. At various stages, the concept may be too abstract for them to fully comprehend, or may include magical thinking to explain concepts beyond their understanding. There are some great resources out there for more specific information, such as The Dougy Center, which has a list of stages and understanding. When looking at the child’s own death, there is often a great deal of fear especially if the family won’t talk about it. Here children might express a desire to stay awake out of fear they will die in their sleep, or an unwillingness to be separated from their parents.

The social worker’s role is to try to get everyone in the family talking honestly about death so that the child can express and worries or fears that he may have and the team, particularly the parents, can talk about how to address these issues. One approach for a 9-year-old, for example, might be to try to get him to talk about what death is and why he thinks he is dying. Developmentally he is starting to have a concrete understanding the permanence of death but is likely to have fears about death being something painful or that will involve harm to his body. Talking through what we know will happen and what we hope will happen allows us to combine the medical with the metaphysical and bring in his parents’ (or his own) spirituality and belief systems.

​Lizzy: I'm glad you brought up spirituality because a person's spirituality (or non-belief) can definitely be an influential factor on their views of dying. While not directly tied to a developmental stage, my experience has shown that the older the client is, the more likely they are to have a strong religious orientation and/or church affiliation. A belief in heaven does not necessarily mean a greater acceptance of death though. Also, we still need to assess spirituality and not make assumptions, because I have seen 99 year old non-believers too.

When I think about the different generations within gerontology and approach towards death, I would also want to acknowledge that an older age does not guarantee an acceptance of death. The process of dying can still be a scary concept ever for elders who have lived a long life and have a strong "faith."

You mentioned previous experiences with death. I always ask my hospice patients what experience they have had with other people dying, especially looking for firsthand bedside experience. If the patient had been bedside and it was a peaceful moment with their loved one, they may be less afraid. If they have not had experience, then I can share with them my own assurances from my work at the bedside. My role is to provide assurance that we will control symptoms and that a peaceful death is possible.

Allie: When looking at a pediatric death, we are also fortunate on the inpatient side to (typically) have access to certified child life specialists (CCLS) who have education in childhood development, medical play and education, and legacy-building. Using these skills they take the lead in memory-making for the child and family, helping the child to make gifts for his or her family such as hand molds or footprints. Some even write songs as part of their legacy with our music therapist. In this way, although they have less life to review that adult patients, they are still able to leave an indelible mark for their families that keeps their stories going.

Allie Shukraft, LCSWA, MSW, MAT, is a pediatric palliative care social worker for Carolinas Healthcare System in Charlotte, NC where she loves reading and walking with her dogs. Although she is still learning how to use it, you can find her on Twitter (@alifrumcally).

Lizzy Miles, MA, MSW, LSW is a hospice social worker in Columbus, Ohio best known for bringing the Death Cafe concept to the United States. You can find her on Twitter @LizzyMiles_MSW

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